Charcot Foot Support

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Those with Charcot Foot asked to provide feedback

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Researchers at Results Group LLC, funded by the US National Institutes of Health to develop a
new system to help people with mobility impairments. We are conducting interviews to gather
information about the mobility of those with Charcot Foot and their shoe type preferences. We
are looking to interview those who have difficulty walking. The goal is to be able to better
understand the activities of those with Charcot Foot in order to design a higher quality product
that assists with mobility in a variety of ways. 


They are seeking participants who would be able to participate in a 20 to 40 minute interview
either online or by telephone, based on your preference. Interviews can be scheduled during
morning, afternoons, or early evenings. 


All participation is voluntary and information is kept confidential. There is a $25 gift card as a
thank you for completing of the interview. 


This study has been approved by the IRB. 


For more information or if interested in participating please contact the research group at
interviewsresultsgroup@gmail.com

Thank you for your consideration.

Could I have Charcot Foot?

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Are you having problems with your feet? Experiencing pain, tingling or numbness? Have you broken your foot recently for no clear reason? If so, you may be wondering if you could have Charcot Foot.

In our experience, and what we have learned from talking of hundreds of people with Charcot Foot, is that most frequently a Charcot Foot diagnosis is missed and does not occur until significant damage is done. But it doesn’t have to be that way. There are early signs of Charcot Foot, that if recognized, can prevent or postpone significant damage from occurring.

Signs and symptoms of Charcot Foot

Reddish

Warm to the touch

Swollen

Numbness or tingling

Slow healing wound on the foot

What to do if you have symptoms Charcot Foot

Addressing Charcot Foot early can prevent deformity and further injury to the foot. If you are experiencing symptoms of Charcot Foot make an appointment with your physician quickly. While waiting for your appointment stay off of your feet as much as possible. At your appointment, make sure you specifically express your concerns about Charcot Foot. If your doctor does not take you seriously, ask for a referral to a podiatrist or orthopedic surgeon for a second opinion. It never hurts to ask for a second opinion. Delaying prognosis can only cause more problems.

Remember, you are in charge of your health. Ask your doctor questions and advocate for your care.

How to get a correct Charcot Foot diagnosis

For Charcot Foot to be accurately diagnosed X-Rays will need to be done on your feet. Without an X-Ray there is no way to know for sure if you have Charcot Foot. An X-Ray will show small fractures or large breaks. It will also give your physician a baseline to go from in the future. If you don’t currently have Charcot Foot that is great news! An X-ray of your healthy foot will be helpful in the future if you do sustain an injury. You will have something to compare. If you do have Charcot Foot, the first X-ray will serve as the baseline, with future X-rays to show how the condition is progressing and if your foot is stable.

It is also common for doctors to order MRI’s or CT Scans of the feet when considering Charcot Foot. They like to get as many images as possible so they know exactly what they are dealing with and how best to proceed.

Talk to others with Charcot Foot

We have interviewed many people living with Charcot Foot about their experiences. Several of them, like Jessie, have shared their diagnosis experience. Lindsey provides wonderful tips for how she interviewed surgeons and advocated to get the Charcot Foot treatment she needed. Reaching out and connecting with others who are living with Charcot Foot can prove to be very beneficial.

Does cold weather make Charcot Foot worse?

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With winter comes cold temperatures and an increase in Charcot Foot pain for many of us. While not everyone with Charcot Foot notices a change during the winter months, for those who do the impact can be significant.

“I never understood what people meant when they would say the cold made their bones and joints hurt,” Jessie said. “Now that I have Charcot Foot I completely understand what they mean. The cold just makes my feet stiff and they hurt. I notice my ankles are rigid and I just don’t move as well. I can’t wait for Spring!”

Other people with Charcot Foot have reported they notice an increase in pain during the winter months. While others report difficulty keeping their feet warm enough.

“My feet are always cold,” Beth said. “Even in the summer when it is 100 degrees outside my feet are freezing. I’m sure it’s because of the poor circulation. But in the winter it is downright miserable. No matter what I do I just can’t keep them warm.”

If you have Charcot Foot and are miserable this winter there are a few things you can do to help thaw your feet out. We reached out to others with Charcot Foot and asked for their feedback on what they have found that helps. Here are a few suggestions:

“Even though I hate the dreaded boot and can wear AFO’s instead I tend to wear my boot more in the winter because it helps keep my foot warm and I feel like it supports my ankle better which lessens the pain,” Jessie said. “If I have to be outside at all for work I will wear the boot no matter what.”

Beth swears by the Tundras Hot Hand Warmers. She says she sticks one in each of her socks when she is at home to keep her feet extra warm. When she is going out she will place one inside her AFO along her shin. She says the heat radiates down her leg and while it doesn’t keep her feet completely warm it does help keep them from turning to ice.

Megan enjoys using this 2 in 1 foot warmer at the end of the day. She says it is a relief to relax and finally get her feet warmed up.

One of our regular readers, Kevin, emailed us and shared these compression socks with us. He says they help reduce his swelling because of the compression but also provide added warmth. He bought them on a whim after seeing them on TV but says they were well worth the investment. We have ordered a few pairs to try and hope they help us too!

Another reader says they try to really focus on their safety during the winter. With increased pain they find their balance is off more than normal. They plan their days around the weather and avoid going out when it is snowy or icy. We agree! Falling on the ice could lead to huge set backs for those of us with Charcot Foot.

We hope some of these suggestions help you! Just remember, eventually Spring will come. Hang in there until it does.

Coping with chronic illness and depression

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Chronic illness and depression often go hand in hand. Those with Charcot Foot are at an increased risk of developing depression. The isolation due to being non-weight bearing can intensify feelings of depression. Those depression may be an ongoing battle there are steps you can take to help you cope with chronic illness and depression.

Talk to a therapist

One of the best things you can do to help manage depression is talk with a neutral person. Talking about your feelings and developing healthy coping skills helps tremendously. While you can talk with family and friends we have found it’s most helpful to seek out a therapist because of their training and neutral status.

Since people with Charcot Foot are often home bound due to non-weight bearing status it can be helpful to find an online therapist. Many of us shy away from online therapy but we have found it is effective and reliable. We use onlinetherapy.com and love it. You work with a therapist trained in cognitive behavioral therapy. You participate in live chats and calls with your therapist and work through the therapy process together. Right now, onlinetherapy.com is offering our readers 20% off to get started. Just click here to begin the process.

If online therapy isn’t for you there are other options. Some therapists will come to your home for therapy services. Call around to different therapists in your area to see if this is a service offered. You can also contact your insurance company for a list of licensed therapists in your area. Seeking out therapy is worth the effort.

Treating depression with medication

If you are feeling depressed it is important to talk openly with your physician about how you are feeling. You doctor will be able to prescribe medication to help treat your depression. Every medication comes with side effects so discuss those with your doctor as well. Many of us with Charcot Foot have found medication to be helpful in treating depression and anxiety.

Develop a routine

Developing a routine can help you cope with chronic illness and depression. When we are non-weight bearing and stuck at home it is easy to sit around and feel sorry for ourselves. The entire day may pass as we sit on the couch thinking about all the things we are missing or stewing in our emotions.

It may seem silly, but creating a daily routine and sticking to it can help you feel better. Even though you are stuck on the couch make a plan for the day. Set your alarm and get up at a decent time and get ready for the day. Have breakfast and complete an activity. It doesn’t have to be a big activity but fold a load of towels, read two chapters of a book, send a note to a friend. Schedule your meal times and a time to exercise. Even 20 minutes of seated exercise will help improve your mood and keep you on a routine.

Connect with others

Maintaining connections with others will help you cope with depression. We all need human connection. Reach out to friends and family and schedule visits with them. Make phone calls and visit with friends you haven’t seen in awhile. Connect with others with Charcot Foot via the support group pages. Every day set a goal to interact with at least three people. You need contact!

Close-up Of A Businessperson With Calendar Writing Schedule In Diary On Desk

Depression should be taken seriously. Don’t wait to get help. Talk with a friend, a therapist, or your doctor as soon as you begin experiencing depression. If at any time you feel suicidal call the National Suicide Prevention Hotline at 1-800-273-8255.

Charcot Foot Doctors: What to Ask

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Trying to find a doctor who is knowledgeable about Charcot Foot can feel impossible. There are very few podiatrists or orthopedic surgeons who have experience with Charcot Foot. The lack of education surrounding Charcot Foot makes it crucial that you take charge of your medical care and ensure you find a doctor who knows what they are doing. Many individuals with Charcot Foot have found it helpful to meet with several physicians and interview them prior to committing to a doctor patient relationship. If you are meeting with doctors here are some questions you should ask.

How much experience do you have with Charcot Foot?

Before you commit to a doctor they should be forthcoming about their experience with Charcot Foot. Ask them some in-depth questions surrounding their experience.

  • What are your educational qualifications and do you have any special training in Charcot Foot?
  • How many patients have you treated with Charcot Foot?
  • What types of outcomes did your previous patients have?
  • How many surgeries have you performed on patients with Charcot Foot?
  • What were their surgery outcomes?

Some doctors have much more experience with Charcot Foot than others. It doesn’t hurt to ask about their past experiences, their residency and educational experiences. You aren’t asking for patient identifying information so the doctor should be able to give you anecdotal information about previous Charcot Foot patients, their surgeries and outcomes.

“I researched the heck out of this disease and I wasn’t coming in and offering myself on a platter to anyone ever again,” Lindsay said. “I made him basically interview for the privilege of taking care of me. ”

What are your thoughts on Charcot Foot surgery?

Some surgeons are very quick to want to attempt reconstructive surgery on those with Charcot Foot. Others are more hesitant. It’s important to know where your doctor stands. Here are questions to consider posing.

  • Do you believe foot reconstruction surgery could be successful for me?
  • Since surgery doesn’t cure Charcot Foot how many surgeries do you anticipate me needing.
  • What are your recommendations for reconstruction surgery?
  • What methods do you use for surgery, pins and plates, external fixator, etc.
  • What factors influence your decision regarding surgery? Blood sugar levels, other health conditions, etc.

Foot reconstruction surgery is a big decision with many factors to consider. You should be able to work with your physician to develop a Charcot Foot treatment plan you both agree on and are comfortable with.

What is your experience with amputation?

Amputation is something we all want to avoid. However, the reality of Charcot Foot shows us time and again that individuals with Charcot Foot often end up undergoing a below the knee amputation. Talk with every doctor you see about their experience with amputation.

  • How many of your Charcot Foot patients end up having a BKA?
  • What factors lead you to recommending a BKA?
  • Do you perform BKA’s yourself or do you have another surgeon you refer patients too?
  • If I don’t want to pursue additional reconstructive surgeries but would like to move towards amputation would you support that decision?

Amputation is another big decision those with Charcot Foot must face. Having a physician who is comfortable having those difficult conversations and who is willing to guide you through the process is beneficial.

Advocating For Your Medical Care

Physicians are intelligent human beings, they have attended school and gone through years of training. However, they don’t know everything and they don’t know you. You know your condition and situation better than anyone else. This means you have to be your own advocate to ensure you get the best medical care you can.

Jennifer, who is living with Charcot Foot, shared her experience with us before and offers some wonderful tips on how to advocate for your own care. You can find those, here.

The most important thing is finding a physician you are confident in and can have open conversations with. Charcot Foot is a lifelong condition which means you and your physician will be working together for a significant period of time.

Improving Balance With Core Stability Exercises

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We all know that when you have Charcot Foot one thing you most likely don’t have is balance! When you have a rocker bottom foot or are trying to maneuver in some type of boot or orthotics you can feel very unstable. It’s not uncommon for individuals with Charcot Foot to stumble or fall due to lack of balance which can be scary and lead to injuries. So how do you improve your balance? By strengthening your core muscles!

Core Strength Matters

Core strength matters because your core works like a foundation, keeping all the other parts of your body connected and working properly. When your core is weak it can lead to bad posture, lack of balance and pain in your shoulders, back and hips. If your core isn’t strong your arms and legs can’t possibly function at their full potential.

How To Strengthen Your Core

The best way to strengthen your core is by doing core stability exercises and core strengthening exercises. We know what you are thinking, “I can’t exercise because I have Charcot Foot and I’m non-weight bearing.” Well, your thinking is wrong! You can do core exercises even if you are non-weight bearing. Core exercises can easily be done from a chair, in a seated position.

No excuses! You can strengthen your core with these core exercises. Both of these seated workouts are short and easy to do at home, in a chair. If you can bear weight that is awesome, you can do even more to strengthen your core but regardless of your ability to bear or not bear weight you can do core exercises. Check out two of our favorite core exercise videos.

Other Core Exercises

We know you really want that strong core because we know you don’t want to risk a fall. We try to do one of the core exercise videos each day to get a strong core but sometimes we like to go the extra mile. An easy core exercise is using an Inflated Stability Wobble Cushion.

It sounds crazy but this little inflatable cushion actually works your core muscles and helps build a strong core. All you do is sit on it! The perfect piece of exercise equipment for someone with Charcot Foot! The cushion wobbles a bit which forces you to use your core muscles to stay stable.

One of the best ways to strengthen your core is to practice good posture all the time. Be mindful of your posture when you are sitting and when you are walking. Your head should be above your shoulders and the top of your shoulder should be over the hip. Sitting up tall and maintaining good posture will help you get that strong core you need.